Great first day of fundraising for Shade

 

Shade trying out the MyoPro’s sensors

Shade’s fundraiser to help get him mobile again started off amazing. In 24 hour, he raised 1/4 of the total necessary funds to get the Myomo Myopro robotic orthotic and the LifeGlider ambulatory device. It shouldn’t be long before Shade is back on his feet and using his arm again.

For those just tuning in, the Myopro is a robotic arm orthotic that will be custom made to Shade’s arm. With the use of sensors like those EKG thingies you have at the doctor, the device will pick up signals when Shade wants to move his arm and translate those to the robot arm. So even if Shade can’t move his arm, the robot arm will do it for him. That means he’ll be able to stretch it out and pick up a glass, grab a door handle and turn it, or defend the galaxy against xenomorphs.

The LifeGlider is like a walker but very different. It straps around Shade’s body so that his center of balance is supported. That way, he isn’t leaning forward and likely to fall. Then he can practice walking without the worry of tipping sideways and bashing his head against the counter. It will also improve his ability to dance the tango.

Both of these devices are going to help Shade achieve independence. Please spread this message around to all your friends and local businesses. Let’s get Shade mobile again!

To donate to Shade’s fundraiser, click here.

Standing on his own two feet

Wheelchair users are faced with multiple challenges. The most obvious are physical, accessibility being on the forefront of the ADA’s agenda. However, a subtler issue that always bothered me is the social obstacle. Wheelchair users are not at most people’s eye level, which makes a huge difference when conversing. Don’t believe me? Have you ever been standing at a party and started chatting to a person sitting? That conversation doesn’t last long without one of you changing position.

Shade hanging out with family friends

Something as simple as being face to face makes a huge difference in social situations. It’s something I always took for granted until Shade had his stroke. I remember years ago, dropping Shade off early at high school. I parked and sat in my car, watching Shade circle the tight clusters of chatting kids, unsuccessfully trying to insert himself into a conversation. Shade’s wheelchair was too bulky to infiltrate the groups. Even if he did get into the circle, because he was sitting, he was often ignored, not out of malice but because he wasn’t face to face. I sat in the car sobbing, cursing my son’s cruel fate. (Yeah, I’m a big crybaby. You should see me at Pixar movies.) Of course, our close friends who have known Shade for most of his life are aware of Shade and make great efforts to include him in conversations. But think of all the everyday situations where people look right over him. And Shade is a friendly dude, not shy at all. I can’t imagine how tough this might be for a person who isn’t as outgoing as him.

Shade has leg strength.

The thing is, Shade can stand. His true issue isn’t leg strength; it’s balance. He tends to topple, especially if he tries to lift a leg to walk. Thus, for safety issues, he’s been relegated to a wheelchair. Shade can stand if he has handles to hold or a counter to lean against, but it’s only for short bouts, for example, to put a cup away or clean his teeth. He can walk, too, but only when assisted by another, and even then balance becomes an issue with each step for both himself and the assistant trying to keep him upright. You can imagine the ordeal this causes Aitza, who is hobbit-sized.

We’ve tried walkers but they’re too dangerous for him. Walkers are held out in front of the body. This causes the user to bend forward, throwing all the weight forward and using the device as an unstable prop. A walker is liable to shoot out from under the stooped-over ambulator, leaving the poor soul splayed out on the sidewalk and hoping the crack he heard wasn’t a hip. Consequently, we’ve never allowed Shade to use a walker alone and have all but tossed them.

The LifeGlider

Recently Shade’s uncle Edwin (Tio Loco) discovered a new device called the LifeGlider. Like a walker, the LifeGlider is an ambulatory assistive device, but it is designed to support the body’s center of gravity so that the user can stand upright. That means hands-free walking … real walking like the body was meant to do.

The LifeGlider has restored my confidence in assistive walking devices. One video on the website shows a user transitioning from a walk to a full Superman­ – legs off the ground, arms splayed out front – and then effortlessly swinging his feet back on the ground. With this kind of balance support, Shade may be able to start walking around the house again. This will help strengthen his legs and give him more confidence in his own balance. Given enough practice, perhaps he could use it at work or in social situations. Who knows what other opportunities might open up if he could stand on his own two feet again?

Like I mentioned in the last blog, we will soon be fundraising for this device and the MyoPro robotic arm (now with flame throwers). Keep your eyes open for the upcoming news.

Shadenator 9000: The Rise of the Shade-borg!

Let’s salute the great cyborgs of our time. RoboCop, Darth Vader, Inspector Gadget, and now the Shadenator 9000, the latest development in Shade technology. But first, this sci-fi tale needs some backstory.

As you are likely aware, Shade’s last two strokes three years ago (17 y.o) paralyzed his left side, wiping out any progress he’d made since his first stroke when he was twelve. (We’d just got him walking again, damn it!) Because his left arm and hand are so weak, they have tightened up, contracting the arm like an L and keeping his fist closed. This caused a vicious cycle. Because tasks are so hard to complete with his left arm and hand, he uses his right, and thus his lefty gets weaker and tighter. We were worried he might lose all use of it.

Then Aitza told me about a friend who started using a robotic device after his stroke and got full use of his arm again. And that’s how we discovered Myomo. It’s not a cult, I swear, though I may be an apostle after Shade and I went to try one out last week with Myomo representative Heather Ward.

Myomo, a contraction of My Own Motion, produces the MyoPro, a powered upper-extremity orthosis that’s straight out of a fanboy’s wet dream. The robotic brace straps on the recipient’s arm from shoulder to fingers. Soft bracelets embedded with sensors are worn on the upper arm and forearm. Like an EMG, they pick up myoelectric signals from the brain that trigger the muscles to contract and move the limb. These signals simultaneously trigger the robot’s motors to move the orthotic in accordance with the desired action. So if Shade wants to extend his arm, that signal is mimicked by the device, which will extend, adding strength to his own arm and allowing him to stretch it out.

Even if the wearer cannot naturally move part of the arm, as long as the brain signal is there, it can be boosted to a level where the orthotic will move it for him/her. For example, Shade cannot move his wrist up and down no matter how much he mentally strains to do so. However, on her laptop, Heather boosted his EMG signal and the robot moved the wrist up and down. Brain power.

Heather demonstrates the MyoPro.

What this means is when Shade straps on his assistive MyoPro robo-brace, he should be able to perform functions with that arm that he’s been unable to do since his second stroke. Things like putting dishes on a high shelf, grabbing a water bottle off a table or petting his precious cat Cheetah. And because he’ll be using his arm more, it will strengthen and loosen up and he may be able to start using his arm more without the device. Plus, I’m shooting for the upgraded version with the laser cannons on it. Pyew, pyew!

What’s more, we’re looking at another device that may help Shade get back on his feet. We’re going to have a fundraiser soon to help with the expense of this device. I’ll tell you about the other device and the upcoming fundraiser in the next blog. Once we get these devices the Shadenator 9000 will be launched.

 

Do better Access Lynx

IMG_9844Access Lynx, the bus service for the disabled in Orlando, is a great ride idea but it FAILS miserably. (Sorry, but I’m going to use ALL CAPS in this because I’m ticked off.) HORRIBLE ONLINE PLATFORM! HORRIBLE PHONE WAIT! Though Shade has some brain damage from his stroke, he can use most web platforms without problem. He’d never be able to use Access Lynx though, so we have to do it for him and it’s difficult for us. I can’t imagine how many people who need the service have been stymied by the site. Here are a few issues.

1. The dated website is bulky and hard to use. It feels like it was built in the 90s. Not user friendly and very confusing. On the booking page, important information is missing like the place to add pick up and drop off locations with no clear explanation of where to do this. The place to add locations is on a completely different page and we had to call the office to figure this out. See next for why adding the locations is horrible.

2. Want to go somewhere? Well, you’re out of luck if you don’t plan THREE DAYS AHEAD. You have to email pick up and destination locations 72 HOURS BEFORE any trip! And each added location is a different email. Then you must hope the staff puts the locations into your profile (I’ve yet to see it added); otherwise, if not added, you cannot access those locations. My son wanted to book a trip to the movies for the next day. Too bad for him. He needed to plan that three days in advance. RIDICULOUS! Imagine if any other taxi service worked like this.

So you absolutely need to get a ride in under 72 hours? Just call Access Lynx offices. Yeah, right. See below why this is an issue.access lynx

3. I tried to book a ride multiple times online to the same pick up and drop off points Shade goes to weekly and, surprise, surprise, was told there was a PROBLEM with the booking. No explanation why it didn’t work even though it’s the same spots each time we book. A note popped up to call the help line. I was ON HOLD FOR 38 MINUTES! (See pic for proof. I took it as soon as someone picked up.) Who has that kind of time to wait? But with the website not working, I’m forced into this situation. Imagine if Shade had to wait that amount of time. He’d never be able to go anywhere.

Note: Once I got through, the assistant did help. I have nothing bad to say about the staff beyond the long hold wait.

Access Lynx is a much needed service but the website needs an overhaul and there needs to be more staff to handle the phones. IT’S NOT JUST BAD, IT’S CRUEL to the people who need this most. Please fix it, Access Lynx. #accesslynx

How do we return this present?

Home for Christmas

Red and green are quite merry when decorating for Christmas but are less festive when dealing with wound infections in a hospital ER. How’s that for a holiday card message? It was inspired by our Christmas visit to Health Central hospital over the last couple days. Harken whilst I recount to you this Christmas tale:

‘Twas the day before Christmas, and all through the house,
Not a creature was worried, not even my spouse.
The invites to family had all been sent out
For the annual Christmas Eve Crampton cook out.

Low Country Boil

Alright, I won’t make you suffer through ten stanzas of corny holiday poetry. Suffice it to say, after returning from Raleigh on December 18, Shade had been taking it easy in his bed and healing. His scars looked pretty good for scars – nice, clean lines and no redness or swelling. Things seemed positive on the whole, so we decided to carry on with our tradition of Christmas Eve dinner, despite urgings and offerings from good-intentioned family that perhaps we should skip it or allow someone else to host. After all, preparing a big meal was a bit much to add onto our plate. However, after spending most of December away from home and engaging in very little Christmasy activities, we felt that this dinner was our only chance at capturing the real spirit of the holiday. But we simplified. Instead of the big roast dinner, decorated table and place settings, we opted for a fairly easy low country boil – a big boiling pot of crabs, shrimp, sausages, potatoes, corn on the cob and spices laid out over a picnic table. My brother Darren would handle all the fixings. Cooking time, less than 30 minutes. Dinner’s on!

(If you are easily grossed out, I suggest you do not eat any pudding while you continue reading.) During the days before Christmas Eve, Shade’s face started leaking fluid. More like gushing. He woke up one morning with a soaked pillow. But the fluid was clearish and didn’t smell, which was good news. We contacted the doctors at Duke and they said that the area was just trying to eliminate the swelling. They weren’t worried so neither were we, though it was a chore to keep the area dry and clean. They should have installed a spigot on his cheek.

On Christmas Eve morning, however, the stitching on his lower cheek had opened up and it was a bit gooey with pus. Blech! So Aitza took Shade to his primary care physician whose office is at Health Central. The doctor took one look and said, “This is way beyond my expertise!” and promptly sent Shade down to the ER. Crap! Back in the hospital. I drove down and met them. The staff were great and tried to make us all welcome and comfortable, but we still had that Grinch-stole-our-Christmas gloom. The staff pumped up Shade full of fluids and antibiotics, took cultures and blood samples, and said he may have to stay overnight. So much for our big dinner. We resigned ourselves to Christmas in the hospital and called up the family to give them the news. But after the culture results all came back green, the doctor said we could take him home with oral antibiotics. We left the hospital at 2 p.m. and called up the fam. Christmas Eve dinner was back on. We supped well that night with our extended family. We opened presents on Christmas morning as custom dictates. We drank merrily and played games with friends that evening, celebrating the blessing of having Shade home for the day.

The ER doctors had asked us to return two days later for a follow up. So yesterday, (Boxing Day for all you Brits who continue the celebration), I took Shade to the ER, assuming that we’d pop in and out in an hour. A member of the on-site plastic surgery team had a gander at his face and said it was looking fairly good, though the patch of stitching where the fluid was leaking had opened up a bit more, which concerned him a bit. Then the doc took the gauze off his leg scar. The site was swollen, hard and flaming red with purple bruising and it was leaking bloody fluid. Uh oh! Not the present you want to unwrap at Christmas. The intense swelling was quite shocking, as Aitza had cleaned and wrapped the leg the night before and it had appeared fine. One look at his leg and the doctor ordered Shade to stay for 48 hours of antibiotics and observation. Yay! Back in the hospital! So much for popping in and out.

Shade was hooked up to more plastic bags of fun juice. The doc sealed the wounds on his face with silver nitrate, which chemically cauterized the opening to prevent more leakage. Then he opened up a patch of Shade’s leg scar to release the swelling. It was mostly blood. No pus. (So we had the Christmas red but not the green, thank ol’ St. Nick.) The doc’s theory was that perhaps there had been a pocket of blood that ruptured and filled up the area, causing the swelling and bruising. (That morning he had had his first home physical therapy session and perhaps that had caused the rupture.) At around 5 p.m., Shade was admitted upstairs. His face, neck and chest were as red as an embarrassed tomato. Turns out he has a hypersensitivity to the antibiotic Vancomycin, which causes “red man syndrome.” (Don’t get all worked up, ultra-liberal hysteria hounds. It’s not a slur; it’s a description.) They replaced the antibiotic with another and he’s back to his normal color, cracker white. (Okay, now you can be insulted.)

“What a fun Christmas!”

Aitza, who had been working all this time and stressing as mothers do, finally got to the hospital at 7 p.m. and took up the night shift. At least Health Central has had a fantastic make over, and Aitza was able to sleep on a pull out sofa, not another recliner chair like at Duke Hospital. I returned this morning and Shade seems fine. No pain or irritation. He did have a lot of blood leakage from his leg, but that’s good as it releases the pressure. One more day of observation and if all is well, perhaps we’ll be clear of hospitals until his next surgery in six months. I think perhaps the Cramptons should get a holiday redo. What do you think? Christmas in January?

Let the healing commence!

Ah, home. No place like it, especially when you’ve been stuck in a tiny hospital room for over a week – after having your face sliced open and stuffed like a Christmas stocking with other parts of your body – being poked, prodded and probed every 10 minutes by doctors, nurses, med techs and elves, the latter a product of hardcore hallucinations from prescription opioids and sleep deprivation. I’m either describing a miraculous surgery or the plot to a serial killer movie.

Winner of the Bubble Yum bubble gum chewing competition

When last I wrote, Shade had just come out of surgery. Both Aitza and I were not prepared for the sight of our child’s face. The doctors had talked about swelling but the size shocked us. And the skin graft was also something unexpected. The surgeons came to the conclusion during the surgery that the skin was too tight and needed extra skin so they made the necessary decision to add skin. So when we saw the two-inch jagged strip of pale thigh skin down his face, we were both stunned. We fully understood the reasoning; we just were not prepared for the dramatic change in his features. Both of us questioned our choice to put Shade through this procedure. Was all this pain and deformation worth the end goal of Shade having a symmetrical working face? Was his situation so bad before that we needed to subject him to such pain and suffering? I mean, we’re making decisions for Shade, and he’s trusting us to make the right ones, but how can we truly know if it’s the right choice until afterward?

Such thoughts can drive a parent into a spiral of severe gloom because unless you’re clairvoyant, you don’t know what the end results will be for any choice you make. And after you’ve made the choice, you have to deal with the consequences if it turns out to be the wrong choice. Back in December 2015, when we chose for Shade to have a second gamma knife operation to prevent him from having a second stroke. We took the risk based upon the information we received. The result of that operation was that six months afterward, Shade had a second stroke from a burst blood blister formed by the operation. It completely debilitated his left side. All the progress he had made was lost. In fact, he was worse off than after his initial stroke.

So watching our son suffer from his latest post-surgery pain messed with our minds because we chose to put him through this. I feel for Aitza especially because she never left his side. She “slept” in a recliner chair by Shade’s bed every day and was with him through all his agony and hallucinations and despondency. She was with him when he became so severely depressed that he said none of his friends would ever want to see him again because he was deformed and he wished he was dead. She held strong through all those heart-breaking moments.

Shade shows how to work a jaw muscle.

Just to set you at ease, Shade is no longer depressed. We think the heavy drugs caused much of that. After he hallucinated about an old lady trapped under a car inside his hospital room, Shade himself chose to go off the drugs and manage the pain with just Tylenol. He lightened up afterward and was even able to laugh about his massive cheek. After all it’s so big, if he walked into a bubblegum chewing competition, the other competitors would take one look and swallow their gum. Chipmunks see him go by and carve statues to their new god, Cheekzilla, he who holds infinite acorns.

The doctors were happy about Shade’s healing and he and Aitza were finally released from the hospital and got to sleep all day and night in a hotel. The doctors had first said that Shade could only have liquids for a month, but they changed their minds and said he could have soft foods. Soft foods? Bah! After I flew back to Raleigh on Sunday, I got him some smothered chicken from Texas Roadhouse and he scarfed it up. He’s got a super cheek now. He could chew cinderblocks.

Hanging with the Clauses

Yesterday we had a last visit with Dr. Phillips the plastic surgeon. He reiterated that the swelling will subside over time. He also stated that there’s excess muscle, fat and skin in there which can be chipped away at a later surgery to produce a symmetrical visage, much like a sculptor might remove excess marble to create a masterpiece. He was very positive about the final results, which eased our stress.

As we were leaving Duke Hospital through the Children’s Center, the staff had set up a Christmas area with carolers, a Santa and Mrs. Claus, and cake and toys for kids. Shade got a picture with the Clauses. Then one of the happy elves gave Shade a stuffed bear and a gift card for Target. It was our first real Christmas moment this year and I cried like it was a Pixar movie.

 

Flight home

By 8 p.m. that night, we had hopped on a plane and made it home to Orlando, where Mayan was waiting to see his big brother. Shade got visits from Abuelita and Bubu (Aitza’s parents) and Uncle Darren late night and from Dadabob (my dad) this morning. And now I sit by his bed writing this while Shade scarfs up scrambled eggs and heals. The future will show if our decision this time was the right one, but now that the pain has subsided and Shade’s surrounded by family at home, we can at least be happy that the stress of the hospital experience is over for a while, enjoy the holiday spirit and focus on Shade’s progress.

Surgery success

Shade looks like half a chipmunk after a +12-hour muscle and skin graft surgery for his cheek yesterday at Duke University Hospital in Raleigh-Durham. He went in at 7:45 a.m. in the morning and got to the post-op area at 8 p.m. Aitza was at the hospital the whole time, having arrived with Shade on Friday for all his pre-op appointments. They met with Dr. Marcus, the plastic surgeon who had performed the nerve graft surgery on March 31. He was very happy with the progress of the nerve graft after Shade told him he kept having little electrical impulses in his cheek, like mini lightning strikes. They also met with Dr. Phillips, the muscle graft surgeon. Both doctors gave Aitza and Shade a rundown of the upcoming procedure.

Meanwhile I had been working in NYC on an HBO special and planned to get to Raleigh on Sunday morning, the day before the surgery. Being a certified idiot, I decided to hit the Manhattan nightlife Saturday with my buddy Larry, daughter Arianny, son Edwin and soon to be daughter-in-law Michelle (yep, Edwin proposed). The kids were smart and bailed on Larry and me before midnight, but we keep going. Suddenly it’s 5 a.m. at the club (Oh yeah, New York doesn’t sleep!) and we both realized that we had morning flights to catch. We Ubered to the hotel, speed-packed our clothes and Ubered to JFK airport in record time. No rest for the wicked.

Shade’s first snow experience

Larry took off for Seattle and I hung out at my gate for the 8:30 a.m. to RDU. But to my dismay, the weather gods decided to dump 13 inches of snow on Raleigh-Durham that morning, causing a chain of flight cancelations. Meanwhile, Shade and Aitza are having a grand ol’ time making snow angels and throwing snowballs. It was Shade’s first snow experience, so the blizzard was a special pre-surgery gift for him…

…and a kick in the goolies for me. After spending 12 uncomfortable hours at JFK waiting for a flight to open up (nope), I decided to fly back to Orlando, get my head on a pillow for a couple hours, and fly to RDU the next morning. But the snowfall caused a chain reaction of delays, so the next morning, after boarding my 9:40 a.m. flight, my plane sat on the tarmac for 1 1/2 hours, then turned back to the terminal where we disembarked until 2:40 p.m. Then we got back on and sat on the tarmac for another 1 1/2 hours before getting clearance to take off. So I missed seeing Shade before he went in. At least I got to Facetime him beforehand.

The black mark along jawline shows originally planned incision. The red marker shows where the two-inch thick skin graft was placed to cover the muscle.

I arrived two hours before he came out of surgery, and Aitza gave me a breakdown of the progress as per the doctors’ updates. Shade was prepped for surgery and went under at 8:45 a.m. Dr. Marcus and the surgical team made an incision from his right hairline down his sideburn, in front of his ear and down his jaw line. Then they lifted the skin up, exposing the cheek muscle, which has been paralyzed since his first stroke on July 14, 2011. Meanwhile, Dr. Phillips harvested muscle from Shade’s inner right thigh, which was placed on top of the paralyzed cheek muscle. Unfortunately, because the original cheek muscle had lost so much mass, the skin on his cheek had shrunk. So when the doctors attached the new muscle, there wasn’t enough skin to cover the incision area. Consequently, Dr. Marcus had to harvest some extra skin and fat from Shade’s thigh and graft that over the opening. Now there’s a two-inch thick strip of thigh skin stitched down his jaw line, which may make for some strange mutton chops. The last thing the surgeons did was put a little stitch at the corner of his right eye so that it doesn’t droop. This will help him close his eye and keep his tears from running out.

The oxygen level going to the grafted muscle must be over 60%. He’s well over that.

Shade’s cheek is the size of a softball because of massive swelling, which is normal. Inside his cheek is a monitor that measures the oxygen level of the blood going into the muscle. It’s supposed to stay above 60%, but currently Shade has 91% oxygen level, a great sign for healing progress. He has a drainage tube coming out of the cheek to release fluid build up. He’s also enjoying a hydromorphone drip, which he can press every 10 minutes. Perhaps “enjoying” isn’t the right word as he’s dealing with some serious pain in his cheek and thigh. He and Aitza also haven’t slept much since the surgery due to hourly scheduled visits by various nurses throughout the night and day, plus random drop ins from the surgical team, residents, nutritionist, admissions and me. And I was complaining to Aitza about not sleeping for two days after my New York party binge.

The good news is the swelling will reduce dramatically over the next days and then keep reducing for the months of healing to come. Dr. Marcus said that in another 10 months, Shade should have a third surgery to remove much of the grafted thigh skin and clean up the scar so that it’s following his jawline and isn’t visible from the front. In that time, the grafted nerve should have a chance to attach to the muscle and get it moving. Shade has a lot of therapy ahead of him, but by next year he should have a somewhat symmetrical face that can smile on both sides.

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